Child hypothyroidism - anyone have a child with hypothyroidism?

[Chippysue]

A friend of mine is concerned about his daughter who is 8 years old. He is hypo (since a teen) and has many hypo family members.

His daughter is lethargic and had a few other hypo symptoms, her TSH was 8.27 recently, her Free T4 was 13.7 (range 9.0-26.0) and Ferritin 85 (range 10-150) the only other wonky result was serum Creatinine 43 (range 50-90).

The GP is intimating that she will not be diagnosed until her tsh rises above 10 - you know that old chestnut!

She is having her bloods repeated, I said to ask for thyroid antibodies, b12 and vitamin d to be tested too.

I just wanted to ask whether anyone knows of another other information about child hypothyroidism - is there a useful book out there that I could suggest he reads?

Also I don't know anything about pediatric endocrinologists - has your child seen one?

I would be grateful for any information, many thanks in advance.

Sue

thyroiduk.org

[helvella]

There are paediatric endocrinologists - for example:

oxfordradcliffe.nhs.uk/forp...

Your friend needs to know that there are special paediatric thyroid reference ranges. And also that there is quite a lot of uncertainty about their reliability and how they were derived. One example:

pathology.bsuh.nhs.uk/Patho...

If that does not work, this should:

tinyurl.com/86gtfdr

In that lab, the TSH range is slighter narrower than the adult range, the FT4 range is very similar.

If we as adults are a bit hypothyroid for a while, it isn't good (I know I don't have to say that really), but in a child it is affecting their development every day. If we then take enough thyroid hormone, we tend to get better. But a child can have permanent issues simply by being allowed to remain hypothyroid. And these issues can vary from obvious (e.g. short stature), to others which are more subtle - like brain development.

I cannot find a single good link to post - lots and lots of fragments, quite a bit that is too oriented to other countries, or towards congenital hypothyroidism, or is behind a paywall and so inaccessible. But there are things to find.

As you know, I am a simple patient, but my opinion is that no child should be left hypothyroid for more than the time needed for test results.

[jmanda in reply to helvella]

I have the same concerns. My soon to be 11 year old is being observed for thyroid problems although the paediatric consultant has signed her off to be monitored by the GP. Her last results were TSH: 7.0 T4: 16.9 because she has no antibodies they are not too concerned. My worry is our strong family history. She has had significant hair loss in the past and other symptoms which could be due to puberty, it is so difficult to find concrete advice linked to young people.

[Chippysue]

Rod, what a star!

Thank you very much indeed! I will keep you posted, Sue

[kazzyhoo in reply to Chippysue]

My daughter is hypo, all I was told at the time was that her thyroid has completly stopped working & she would be on pills for life, she was 9 years old and it all happened rather rapidly, within a few months (going from being fit, healthy & bright to total opposite).

She was referred to a child endo and had lots of other tests such as bone density, they said they had caught it just in time before any major damage was done.

My daughter is now 17 and is still on the same dose as when she was 9, 75mg levo, she is not 'right' at all but the endo just says 'within normal range', I guess that because I've been struggling so much to cope with my failing thyroid (and my young son who has health probs) for so long, and I trusted her endo cos she was nice....... it is only this last year that I have learnt to question them, get copies of all blood tests etc, unfortunately I wasn't able to go to the last review as I was seriously ill in hospital, BUT I'm gona make sure I'm at this next one in a few weeks time, armed with lots of questions!!!

At least your friend has an advantage in that he is hypo himself and knows what tests to ask for, I don't understand why his daughter has not been referred straight away to the endo though!

I do hope his daughter gets treatment asap and feels better soon

[Chippysue in reply to kazzyhoo]

thank you so much for replying, it certainly sounds like you have your hands full. 75mcgs is such a low dose! just a little more than the starting dose! Surely she should be on more! What was her Free T3 and Free T4 when last tested?

Sue x

[nostoneunturned]

There is much information re pediatric hypothyroidism at:

emedicine.medscape.com/arti...

Referral to an endocrinologist skilled in paediatric hypothyroidism surely should be sought, for it seems ludicrous to apply standards of diagnosis, which fail most adults, to a developing child. the effects of delayed treatment are set out in the various sections.

[Chippysue in reply to nostoneunturned]

thanks you for replying - very true!

I am sure that my friend will do all that he can. He is only just starting to feel well (with the help of T3) after years of being told that his thyroid was well replaced. He could write a book!

I will keep you posted.

Sue x

[nostoneunturned in reply to Chippysue]

I'm glad to know your friend is now feeling much better with addition of T3 as his will mean he has the drive and energy to pursue correct treatment for his daughter.

We might have the same book to write! T3 addition (by Dr Toft) after 7 years of hell finally brought me out of hell back to the world.

I wish your friend and his daughter the very best of progress.